Sunday, 5 April 2009

Moments of win.

I went to clinic on Wednesday, and I saw the Doctor I prefer (Ken Lerner, anyone?) and, I have to say, that guy is defiantly a great doctor. Straight away, he figured that meropenem hadn't worked and that I need more IVs, although not right away. So I'm on a 15 day course of cipro (Yeah, again) in the hopes that it will help, and then I get more IVs on the 28th April. Anything to keep back the bucket load of infections that have a party in my lungs everyday.

Oh, I've just remembered that the last time I hit over 80% for PFTs was during October/November, and I was halfway through a course of Cipro (Well, that and the MRSA tablets, although I don't think they actually contributed in any way to the condition of my lungs). So maybe if I don't bitch about Cipro, it'll work again, and I'll be on a massive 'I've just done bloody awesome' high. This had better be soon too, as the last few nights I've been coughing non-stop, and feeling like theres an elephant on my chest. Okey dokey St. Cipro. Feel free to whack away at any pseudomonas germs or whatever else I have in there that gets in your merry way. Give 'em hell from me too.

Also, at clinic I noticed that the other dr had written a, well, a novel to be honest, in my hospital book. I never got round to reading it, (what is it with the Doctors and their possessiveness of my hospital book? It's about me surely I should be the one who is allowed to read it?) But I did read the word 'attitude'. Fantastic. I'm trying really, really hard. I'm trying not to be so cheeky (Although it comes so easily!) and I'm trying to be kinder and everything. In health and social care, as part of our coursework, we needed to do this 'peer feedback' exercise, where you switch around writing notes on each other's skills and so on, like organisation, empathy, and presentation skills. On one of the skills (can't remember which though) A friend had written that I'm not cheeky or rude to classmates or my teachers, but another friend had written next to that 'Hear hear!' which hit me a bit, even though it was a bit of a joke, not meant to be taken seriously. That's how I'm going to be remembered, the small, blonde, radgy lass. Bright side, I can work on it so that people I meet at college will know the less cheeky me. I have got to stop using my hearing as an excuse, even if its how it started. (Basically, if you loose your hearing when you're around 11, people are gonna take the piss out of you when all of a sudden you can't hear, and in a way of defence, I started basically being a bitch.)

Nothing else happened at clinic. I think I lost weight again though, so anyone who knows any decent food to eat, with plenty of protein and fat and all that jazz, I'd love ideas, cuz no matter how hard I try, that damn scale seems to have it in for me. If you want an actual idea of what I weigh, its about 6st 11 pounds. Given the fact that I'm 5'1'' and 17, I'm sitting in between the 'underweight' and 'OK weight' on the little coloured weight chart. I'm hoping any weight I gain goes straight to places like my wrists/arms and legs which are ridiculously boney.

One last thing to say, and I'm done rambling. I can't remember if I've mentioned this at all, but where else to start then from the beginning? A couple of months ago I found out that people with CF are actually eligible for a Make-A-Wish, which is available for sick kids aged 3-17. Seeing as I'm 18 in 4 months, I thought it'd be worth filling in a form to see if I'm 'ill enough' (Some kids with CF have been known to have the reply 'not at the moment cause you're technically too healthy. One fantastic thing about a progressive disease ey?!) Aaaaaaaaaaanyway. So I filled in the form, they contacted my Doc to check I'm as ill as I am, and on Friday, my dad got a call saying that they'll be coming over on Wednesday, and 'can't leave the house till I've made 3 wishes' (Which is literally what they said. Oh, and it also means that I passed the whole interrogation on my 'health' too.) This is presumably because some kids may ask for something that just isn't possible. Bless 'em, I've read stories of some kids hoping to get a guardian angel or something along those lines. I never wanted to ask for something complicated. My first idea was a shopping spree, and hell, I don't even mind if its just at my local shopping centre. I've never been on a shopping spree, just for me, cause when ever we went shopping, it would never be a kind of 'I've got loads of cash to blow' kind of thing. And either way, my younger sister would always get more, mainly cause I'm just too picky. (Actually, one of the reasons why I chose 'shopping spree' as a good idea was because that way I'd be able to buy something for my sisters too, so they wouldn't feel left out. Otherwise I'd probably feel guilty or greedy, or something else along those lines.)

Maybe after all that, when I do the great strides/5k? one day that I'd promised myself I'd do (Obviously for CF) maybe I'll do another one for Make-a-wish.

3 comments:

Christy said...

Oh man, I can't wait to see what wish you are granted. :)

There are still a few CFers that I question. Not really sure if they are posers or not. It's still hard to imagine anyone doing this.

I'm so thankful for all the CF blogs too!! :)

Princess Talana said...

I got my make a wish at the exact same age that you are. Mine was to go to New York and see Broadway and it was so amazing. We actually went on the trip when I was 18, so you are safe being so close, as long as you are in the system before your birthday.

RunSickboyRun.com said...

I wasn't around for the mentally ill girl that got exposed for being a fraud....what exactly happened?

That must be why I got grilled by a woman on CF.com as to if I were legit or not. I actually found the letter a little offensive (considering that she didn't even have CF). You can read her letter on my blog and the kind responses that I got from other CFers. It's pretty interesting.

That's awesome about your wish. I got mine when I was about 12 or 13 and I got a shopping spree to Best Buy or some electronics store. It was a lot of fun and they took me over in a limo.

That's awesome that you're looking out for your sisters too!!!

When are you going to start training for the marathon?

Ronnie

My annual ridiculous hospital adventure

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